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Thursday, August 29, 2013

my kid has the autism

First thing to note... this is not an autism blog. This will never be an autism blog. This blog is about life. My life, the life of those around me, the things that are enjoyed the most, like movies and music and fellowship and so on... just wanted to make that point, lest you think that from here forward, all I'm going to do is write about autism. I'm not. I'll refer to it, but it won't be the dominating factor in this blogsite... nor in our lives. Cause its not an end. Its a different path. That's all.

My son, Campbell Isaiah, is autistic.

And he's still pretty freakin' awesome.

You see, I only knew two things about autism. That autism existed, and that if you were high-functioning, that means you had Asperger's, a form of autism. That's it.

I know lots of kids with autism. I know lots of parents who have autism. And I knew that Campbell had something going on with him.

Bottom line, could Campbell have autism? No. No way. I mean, we did everything right, right?

We have regulated his diet from pretty much the beginning... he didn't breastfeed, so we did formula... his system didn't like the formula we gave him (Enfamil and then Gerber Baby--nothing wrong with those products, he just didn't agree with them). So we started making our own, using goat's milk and some nutrients we had researched and liked. As he got older, we began to regulate his diet.... when he started eating solid foods, it was nothing but straight up fruits and veggies.

Rutabaga... carrots... peas... squash... beets... blueberries... bananas... apples... nectarines... pears... mangos... peaches... you name it, he'll eat it. Just peel, steam, blend and feed. We dropped the blending part, and just cut up into small chunks after a few months. The only thing we have found that he just will.not.eat. is broccoli... he took it off the fork, and without even trying it, dropped it onto the floor. That's his way of saying, "Nope."

On the bulletin board at the clinic

But we everything right! We took caution and care to make sure he wasn't getting anything he wasn't supposed to... and yet, here we are. So... you're telling me that any kid can get autism, really... hmm.

We began getting both speech and occupational therapy with him at our home. A couple of chicks would come here, work with him in playing and speaking, and again, they recommended an autism screening. The Mitchell's Place was the first one that everyone referred us to, but after calling, the couldn't get us in until October.

We certainly couldn't wait that long... so after doing a ton of research, The Lovely Steph Leann then got us an appointment with the University of Alabama Autism Spectrum Disorder Clinic... and we braced ourselves for what we knew would probably happen.

For about three hours, we were interviewed by one of the psychologists. They asked all kinds of questions like, "Does he do this..." and "How does he react when..." and "Have you noticed him doing..." and stuff like that. I wanted to answer positively on everything, but just couldn't. We had to be honest. And the longer it went on, we knew.

Another lady played with him the entire time, doing specific activities and games with him to gauge his motor and play skills. She pulled out certain toys to see how he problem solved, and blew bubbles all over the room to see his reaction. And both she and the psychologist made lots and lots of notes.

They left us, and came back a 1/2 hour later, and simply said:

Campbell has Autism.

Boom.

We knew it, but there's something about having someone official say something so official.

He has autism.

Boom again.

Turns out, there is something called an autism spectrum... its like a line, and the higher you go, the better you are. He ranked somewhere in the middle, at a 56. His motor skills ranked high--in the 16 month old range. His expressive and reactive? He's at a 5mo level. He has the same kind of expressive reactions to us that he had in April of 2012.

He has autism.

We talked for a while about the things we have done, and what the future holds. The next few days came, and went... nothing really changed for Campbell or us. We kept on doing what we were doing... same food, same play activities and so on.

She told us, "I've seen children that were higher on the spectrum plateau in a few years and never get better. I've seen children much lower on the spectrum grow up and have productive, wonderful lives. Take it year by year."

Saturday night, we did our little share of grieving... I watched him. I watched him move around the room and all the things the psychologist had said rushed back to me... the signs. The symptoms. What he would do, what he wouldn't do. And it was true. If these were the signs, then yes

He has autism.

A day or two more, thoughts filled my mind... this wasn't supposed to happen... remember, we did all the preventative measures. We didn't even vaccinate (that's another story for another day)! I mean, Campbell was supposed to grow up... play with Buzz Lightyear and Lightnin McQueen... take tennis lessons... become a teenager... drive... graduate high school, work at Starbucks, go to college (go Trojans!), find a nice girl, date... grow old!

And now? (in my most panicked voice) He's got The Autisma! He's broked! Now he'll be a drooling goob living with us when he's 45 years old, sucking all of our resources and finances because we continually have to get him care, because he can't even bathe himself!!!!!

Sigh.

We know this isn't all true. But it all ran through my mind. That's what Fear does. Fear takes the worst case scenarios, usually far fetched, and turns them into the most likely scenarios.

So we had to Punch Fear in the Face. Pray about it, push back those anxieties, and start to look ahead.

But a few days ago, something huge occurred to me... back 10, 15, 20 years ago, The Autism was a fun-life death sentence. Meaning, if your child was autistic, you had limited resources, limited options, and I'm guessing a vast majority of diagnosed kids didn't get the help, training, therapy and opportunities they deserved and needed, leaving only a small number that went on to have those awesome lives.

This was taken about 4 minutes ago. He spends so much
time trying to get my attention, its hard to get things...
but just now, trying to get a good picture, I couldn't keep
him around me... little turd.

Nowadays, I think that's completely reversed. I would think a huge majority of autistic children now have those resources in abundance, therapy available, and many, many more options than ever. I'm not saying all children have this chance, but I think those who don't are not in the majority, but in a much smaller minority.

I voiced this theory with Melissa, our occupational therapist, and she wholeheartedly agreed. She said simply, "All the guarantees that he had for opportunities to be successful... he still has them. Its just a different path he'll be on." We were very encouraged that we not only caught it early, but we also started doing some of the things needed months ago.

So here we are... we take it week by week, month by month, year by year... actually, like most parents will, with their own children.

We are indeed taking year by year. But we are optimistic that Campbell Isaiah has a great future ahead of him.

6 comments:

It is difficult for folks that aren't in "the situation" to really know what to say, to do, etc so forgive us all in advance. Actually don't, you have an awesome son who is on a mission, yes it is a different mission or different path but the ultimate goal is the same for us... for our kids to spread His glory. He has a mission - I would venture to say that the mission we thought we were on initially has changed many times in our own lives.

Know, that as you and Steph move through this adventure together you all are showered in His love and our thoughts as we do for our friends... at least when we come up to take a breath.

Hey, my name is Corrie Kent. I'm Michelle Kent Porter's sister in law. I too have a son with autism. He's 7 and is high functioning autistic. I loved reading your blog and I really enjoyed you being real about everything. I also have a blog that I use mainly to write about my son's life with autism. It's www.corriekent.blogspot.com. You are so right when you said that there are so many things out there for these kids now days. We moved to Auburn, AL a few years ago because of the school systems here and they have been amazing with Jacob. I pray the best for you guys and if you ever have questions feel free to ask! I loved having friends that had been in the autism world longer than we have. They've had great advice for me!!

The Spark by Kristine Barnett is SUCH a good book and amazing. I know you and Stephanie are highly intelligent, and creative! I suggest the book as a way of seeing Campbell's potential on that different path - it's only limited by the imagination, the fears. Praying for you!!

What did come to mind were these words from Isaiah 43:"Fear not, for I have redeemed you. I have called you by name. You are mine. When you pass through the waters, I will be with you. The waves - they will not overcome you. When you walk through the fire, it will not consume you. Do not fear. For I am the Lord, your God. I, am the Holy One, of Israel, Your Savior! Do not fear. I am the Lord."

I don't know if those words are comforting or not, but felt impressed to pass them on.